'Long COVID', Similarities to AI disease(s), 'Bodily Memory' and Ongoing Symptoms - some thoughts

[Rimmy]

Hi Everyone

Just listened to a fab radio programme on our Radio National ABC here in OZ and will add the link here below although I am unsure if it can be picked up in other countries:

abc.net.au/news/health/2020...

Anyway even if you cannot listen to this programme - & long story short - most of you will no doubt now have heard about what they are calling 'Long Covid' - where people develop ongoing long-term serious symptoms similar to those in some autoimmune disorders - like RA and GCA for example. 'Brain fog' is one major feature, muscle aches and pains, headaches and all kinds of stuff many of us here are too familiar with. It is of course very concerning that there are more and more of such ongoing 'cases' and numbers will continue to grow with the spread of infections. The interviews on this particular show are quite scary but very interesting as with doctors who only became aware of the potential severity (in many diverse forms it seems) of COVID that just didn't go away !! Some say they now feel far more sympathetic to people with things like Chronic Fatigue and Fibromyalgia -than they once would have been - realising that such conditions and their unnervingly 'similar' symptoms were not something to be discounted as trivial or even 'imagined' as they may have once been regarded in some of their past patients.

Among many other aspects there was one further possibly quite significant issue that came up in this programme which rang a bell with something an intelligent brother of mine suggested to me several years ago after I had a peculiarly awful and elongated dose of influenza (type never established). I was telling him almost 18 months after the 'end' of this flu I still had hardly any sense of taste/smell and often felt residual symptoms - like feeling 'fluey ' and like I had 'low blood sugar' or just 'under par' a lot of the time. He said then: 'it may be possible your body is BEHAVING like you STILL have the virus - even though it isn't still active in your body'. While at the time this didn't necessarily make 'scientific sounding' sense to me I remembered this when I heard someone say something very similar about the long term or ongoing 'reactions' some people still have had even when in theory they are 'free' from the COVID 19 virus. It is also a matter of personal consideration that although it was a few years later I developed PMR/GCA that I never felt quite as well following that 'long (6 weeks of explicit flu symptoms - followed by 18 months of longer symptoms) version' of whatever virus I had then.

I'm not sure if anyone will connect with any of these thoughts & observations and If people outside of OZ can listen to or read about this programme but it contains much interesting - if potentially disturbing material- about things we still have so much to learn about.

Hoping you are all 'safe' and as well as you can be

Best Wishes

Rimmy

[Theziggy]

Ling Covid is all over the news and TV in the UK Rimmy

Thanks for the links

[PMRpro Ambassador]

Given they have known about post viral fatigue syndrome for a very long time, it seems strange to me that they are so surprised at LongCovid! And they are also aware that a viral infection can be the final trigger for all sorts of autoimune disorders

In my mid-late 20s I had what in retrospect was almost certainly the herald of ME - it fitted the pattern of a "viral" infection with raised liver enzymes followed by about 6 months of total bleugh. I was lucky, it lifted eventually although I couldn't walk up stairs without gasping for the next 3 or 4 years! At the time there was a 6 month wait to see the relevant consultant and by the time I saw him I was getting better. "Must have been a virus. Shame we didn't see it ..."

But if LongCovid knocks down barriers for the rest of us a/i community - something good may come out of it after all.

Just read the link - and you could replace "longCovid" with "lupus", "inflammatory arthritis", "vasculitis of many varieties" and a whole host of other chronic illnesses caused by immune system malfunction. Those patients lose their old lives too - go to any lupus or active vasculitis forum and hear their heart-breaking stories of fighting for recognition and diagnosis of add-ons to the underlying disease.

[Rimmy in reply to PMRpro]

Couldn't agree more with you here PMRpro : "But if LongCovid knocks down barriers for the rest of us a/i community - something good may come out of it after all."

- let's live in 'hope' !!

[123-go in reply to PMRpro]

Will be a big step forward for ME/CFS sufferers who have been largely ignored, disbelieved and left to get on with it.

[SnazzyD]

Oh yes, on a Facebook Covid group, what people describe is what one reads here. It also shows that so many people say steroids have helped them. Early on they identified IL6 being in abundance with Covid. In Feb when Covid was someone else’s problem to the UK I read a piece from a Chinese man online who spoke about it and said they had given him steroids because of IL6 and it was very helpful to his recovery. When I think I got it early March I was ready with my Pred when the acute bit abated and it felt like another phase was starting.

The UK is very much waking up to long tail Covid in the ‘thinking press’ though people are still left in limbo, especially those of us who didn’t get a test in the early months. There is also still much scepticism though and sufferers are seen as malingerers or just depressed. Lives are being quietly ruined possibly for the want of a bit of steroid.

[Rimmy in reply to SnazzyD]

Thanks - interesting as not so much discussion about all this here in OZ which has had relatively so 'few' cases !

[Theziggy]

You had a stockpile of Pred???

[Bro-]

I was thinking the same thing but I just has my antibody test and it was negative ruled that out. But I was septic 3 years ago and hospitalized I still wonder if that has anything to do with my PMR/ GCA? I’ve never felt the same since then.

[Qbits]

Long haulers of Covid have been mentioned a little here in Canada - a close friend is a long hauler, and was been interviewed fairly extensively on public media. However, election news seems to have taken over from that. And yes, I am hoping that all this noise helps with research into the similarities with other AI conditions.